Heart transplant needed for baby girl: 'It's hard to watch her b - KTTC Rochester, Austin, Mason City News, Weather and Sports

Heart transplant needed for baby girl: 'It's hard to watch her be like this'

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Baby Charlotte at Saint Marys Baby Charlotte at Saint Marys
Charlotte's mom, Nikki, and dad, Dave Charlotte's mom, Nikki, and dad, Dave
Charlotte's brother, Alex, gives her a kiss. Charlotte's brother, Alex, gives her a kiss.
Charlotte's sister, Grace, speaks about the family's medical journey at Folwell Elementary. Charlotte's sister, Grace, speaks about the family's medical journey at Folwell Elementary.
ROCHESTER, Minn. (KTTC) -

A 4-month-old girl being treated at Mayo Clinic is in urgent need of a heart transplant.

Charlotte McChesney was born in February and was diagnosed with Noonan syndrome, a genetic disorder characterized by abnormal development in various parts of the body. For Charlotte, her heart muscles are abnormally thick -- a condition called hypertrophic cardiomyopathy -- that prevents her heart from pumping blood properly. 

"The best way to imagine is she's running a marathon all the time, like how we would feel if we just ran a 5K," explained her father, Dave.

In addition, Charlotte's disorder features an RAF1 gene mutation, making her one of only 11 documented cases in the world, said her mom, Nikki.

"Our reaction at first was no matter what she had, we were gonna love her," Nikki said.

So far, Charlotte has spent her entire life in hospitals. She previously stayed in the neonatal intensive care unit at Children's Hospital in Minneapolis. In April, she was transferred to Mayo Clinic Hospital, Saint Marys Campus.

"I'm sad. It's hard to watch her be like this," said Nikki as she watched her daughter in the ICU. "Just sedated and uncomfortable. I wish she could just be a baby... Yeah, breaks our hearts."

Charlotte's family is from Benson, Minn. But her parents left their jobs and their community in order to be with her in Rochester. Charlotte's mom and dad, her 10-year-old sister, Grace, and her 7-year-old brother, Alex, are currently staying at the Ronald McDonald House. 

The family just learned that Charlotte's heart has gotten so big, it has completely collapsed her left lung. To help her breathe, Charlotte is scheduled to undergo a tracheotomy on Thursday.

"Maybe she'll smile again, take a bath, hear her cry -- those little things that we overlook," said Nikki.

But Charlotte's long-term survival depends on a heart transplant.

"It's something that we would not take lightly. It would be the most amazing gift and the biggest miracle that we could ever receive," Nikki said. "We would owe her whole life to some amazing other baby."

Charlotte has been listed as 1A (the highest status) on the transplant list for nearly 70 days. But so far, a donor has not been found.

Charlotte's sister, Grace, spoke about her family's medical journey during the fifth-grade recognition assembly at Folwell Elementary School Wednesday afternoon. She wrapped up her speech by sharing an important life lesson.

"Put your hand on your chest. Do you feel that? It's your heart. God gave you it for a reason and not everyone gets that privilege. And sometimes, people take that for granted. I know I did. But I realize I'm happy I'm healthy, and I can run and laugh. So always remember, we are all truly lucky," Grace said at the assembly.

To help the McChesney family with their mounting medical bills, you can donate to their YouCaring page by CLICKING HERE. In addition, you can follow Charlotte's progress by visiting her Facebook page.

The family says donations can also be dropped off at the Ronald McDonald House at 850 2nd St. SW in Rochester.

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